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Cystic Fibrosis

National Organization for Rare Disorders, Inc.

ImportantIt is possible that the main title of the report Cystic Fibrosis is not the name you expected.

Disorder Subdivisions

None

General Discussion

Cystic fibrosis is a genetic disorder that often affects multiple organ systems of the body. Cystic fibrosis is characterized by abnormalities affecting certain glands (exocrine) of the body especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs) or externally (e.g., sweat glands). In cystic fibrosis, these secretions become abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection. The symptoms of cystic fibrosis can vary greatly in number and severity from one individual to another. Common symptoms include breathing (respiratory) abnormalities including a persistent cough, shortness of breath and lung infections; obstruction of the pancreas, which prevents digestive enzymes from reaching the intestines to help break down food and may result in poor growth and poor nutrition; and obstruction of the intestines. Cystic fibrosis is slowly progressive and often causes chronic lung damage, which eventually results in life-threatening complications. Because of improved treatments and new treatment options, the outlook and overall quality of life of individuals with cystic fibrosis has improved and nearly 50 percent of individuals with the disorder are adults. Cystic fibrosis is caused by mutations to the cystic fibrosis transmembrane conductance regulator (CFTR) gene and is inherited as an autosomal recessive trait.

Supporting Organizations

American Lung Association

55 W. Wacker Drive

Suite 1150

Chicago, IL 60601

USA

Tel: 1-800-548-8252

Email: info@lung.org

Website: http://www.lungusa.org

Canadian Cystic Fibrosis Foundation

2221 Yonge Street

Suite 800

Toronto, Ontario M4P 2C9

Canada

Tel: 416-485-9149

Fax: 416-485-0960

Tel: 1-800-378-2233

Email: info@cysticfibrosis.ca

Website: http://www.cysticfibrosis.ca/?lang=en

Childhood Liver Disease Research and Education Network

c/o Joan M. Hines, Research Administrator

Children's Hospital Colorado

Aurora, CO 80045

Tel: (720)777-2598

Fax: (720)777-7351

Email: joan.hines@childrenscolorado.org

Website: http://www.childrennetwork.org

Cochrane Cystic Fibrosis and Genetic Disorders Group

Institute of Child Health, University of Liverpool

Alder Hey Children's NHS Foundation Trust

Liverpool, L12 2 AP

United Kingdom

Tel: 441512525696

Email: nikkij@liverpool.ac.uk

Website: http://cfgd.cochrane.org

Cystic Fibrosis Foundation

6931 Arlington Rd.

Bethesda, MD 20814

Tel: (301)951-4422

Fax: (301)951-6378

Tel: (800)344-4823

Email: info@cff.org

Website: http://www.cff.org

Cystic Fibrosis Research, Inc.

Bayside Business Plaza

2670 Bayshore Parkway

Mountain View, CA 94043

USA

Tel: (650)404-9975

Fax: (650)404-9981

Email: cfri@cfri.org

Website: http://www.cfri.org

Cystic Fibrosis Trust

11 London Rd

Bromley

Kent, BR1 1BY

United Kingdom

Tel: 2084647211

Fax: 2083130472

Tel: 3003731000

Email: enquiries@cftrust.org.uk

Website: http://www.cftrust.org.uk

Cystic Fibrosis Worldwide

Evka 3 Mahallesi

127/19 SOKAK NO/25

Bornova, Izmir,

Turkey

Tel: 902323756856

Fax: 902323756856

Email: information@cfww.org

Website: http://www.cfww.org

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Tel: (301)251-4925

Fax: (301)251-4911

Tel: (888)205-2311

Website: http://rarediseases.info.nih.gov/GARD/

Global Fibrosis Foundation

Yale Dermatopathology Service

15 York Street, LMP 5031

New Haven, CT 06520-8059

USA

Tel: (727)433-8180

Email: globalfibrosis@gmail.com

Website: http://www.globalfibrosis.com

NIH/National Institute of Diabetes, Digestive &#038; Kidney Diseases

Office of Communications & Public Liaison

Bldg 31, Rm 9A06

Bethesda, MD 20892-2560

Tel: (301)496-3583

Email: NDDIC@info.niddk.nih.gov

Website: http://www2.niddk.nih.gov/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

Last Updated: 3/15/2016Copyright 2014 National Organization for Rare Disorders, Inc.

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